dan

As I write this, Daniel P. Richardson — one of the most loving, giving, charismatic, profanely truth-talking, monumentally interesting and utterly unforgettable people I’ve ever known and ever will — is in his last days. His blood cancer finally brought his numbers too low, and he stopped the transfusions that had been keeping him alive. So he’s home right now, welcoming friends and family who arrive for one last moment or two with this indelible human being.

My kids call him “Pop-Pop.” I call him my second father, the friend and former headmaster who took over after I lost my parents and sister in a two-year span. His wise and beautiful wife, Pat, was “Nana” to my kids and a second mother to me. I can barely articulate just how much they and their brood have given us over the years. I can barely imagine this world without him.

Not barely. I can’t articulate it. I can’t imagine. But as Dan told me during my own moments with him — probably final — just this morning, it’ll be okay. I will, too. He held my hand as he said this: “You’ll be okay.” He knows how much I love him, he knows how much I’ll miss him, he knows how much his time on this earth and in my life have meant to me and always will, and he knows none of that will ever change.

For the last several months, I’ve tried to give something back by helping him with his memoir: “Surprised: A Richardson Story.” He was in a rush, knowing he would die from myelodysplastic syndrome and determined to get his life on paper before he left us. About a year ago, he started writing it; by early March, he’d finished it; over the next several months, we whipped the manuscript into shape and published it on Lulu.com; at the end of July, we celebrated its release.

Then, a week later, Dan nearly died of sepsis and plunged into delirium. It took him months to recover and emerge from rehab, and when he did, he decided to write a new chapter to tack onto the end of his book. An “addendum,” he called it: His thoughts on almost dying of one disease and surely, gradually, inevitably inching toward death from another. I again agreed to help him, recording long conversations and doing my best to inhabit his thoughts before assembling his final reflection on life, death and love.

In January, I finished it. He gave it the stamp of approval, but asked me to hold off on publishing the newly revised book until he returned from a winter trip to Key West with Margaret, his loving partner and a rock to us all.

When he got back, his numbers plunged, and he stopped treatment. On Friday I drove out to see him. On Saturday morning, I asked if he had anything more to say in his book, any final words about his final days. And he did: a handful of plain, beautiful sentences about family and friends. I added them to the end — an addendum to the addendum — then uploaded the revised book to Lulu and hit “publish” once again.

Below are excerpts from Dan’s “Thoughts on Dying.” Typing this now from my kitchen in Albany, I still can’t believe he’s about to leave us. I still can’t comprehend either the bottomless nature of love or the fathomless nature of loss, or how we can’t know one without risking the other.

Thank you, Dan. You are a blessing forever. Such insufficient words for all that you’ve given me and my kids, but that’s all I can manage right now. It’s okay. I’ll be okay. I love you.

Addendum: Thoughts on Dying 

Excerpts from “Surprised: A Richardson Story,” By Daniel P. Richardson. Lulu Press.

I thought I was finished with this book. I was finished with this book. But a week after my family celebrated its release — along with Betsy’s birthday — with a party at Margaret’s house, I almost died from sepsis. And I found I had more to say.

But while I wanted to churn out one last chapter, I didn’t want to write it. I’m on pain meds, I don’t have the energy any longer, and I’m nearing death from MDS. So Amy is writing this for me. She interviewed me, recording multiple conversations over the course of a four-day weekend, and then she pieced together my thoughts in my voice — or as close to my voice as she could get. What you’re now reading is Amy channeling Dan, assembling my final reflections and messages that I want to convey to those I love.

Maybe you’ll get something out of it, maybe you won’t. But for what it’s worth, this is how it feels to live while dying.

****

. . . .I was already dying of MDS when, on Aug. 6, 2019, I got a staph infection that settled in my lower back, prompting indescribable spasms of pain. My bone marrow was already malfunctioning, failing to generate blood cells and stave off infection. I was already in the end stages of a fatal disease. This is what happens with MDS: While you’re getting sicker, you can still do a lot. You can still walk and talk and drive and go see movies and drink. You can still live while you’re coping. But you just start slowing down, and then you wind up giving up time each week to getting blood transfusions to keep you going — and at some point, for most people, that gets overwhelming. You make a decision to stop.

And the odds catch up with you. You wind up with internal bleeding of some sort — due to the scarcity of platelets. Or your heart stops.

Or, one day, you get an infection.

Mine should have killed me. I was in my X5, driving back from an appointment with a high-powered blood specialist, when I got slammed with back pain. I got home, made it upstairs and went to bed. But the pain was too great. I was in such agony, way beyond anything I’d ever felt — and I’ve had half a dozen major operations on my body, so I knew pain, or thought I did. Heart-valve replacement. Knee replacement. Surgery on my back, which led to the insertion of the metal plate that got infected. But in that brief period before I went black, all but disappearing from the face of the Earth, I experienced a pain that I had never before experienced, anticipated or even thought was possible. And I wound up in intensive care at Dartmouth-Hitchcock Medical Center.

Three weeks later, I woke up confused. I didn’t know where I was, or what was going on around me. I was in a strange place. I had some family around me. People were telling me I’d been sick, but I didn’t understand them, and even if I could, I didn’t believe them. My back hurt badly, and I resented the pain, the loss of mobility, the way I was being slowed down and restricted by whatever was going on. I was angry, loopy and combative. I fought everything, which was complete bullshit on my part, because I was weak. I lashed out at people, spending that whole time in the hospital getting pissed off. I didn’t know where I was or what was going on. I was completely out of it; according to my own pet theory, this was a protective device in response to the pain. But I knew that an awful lot of my family was around, Margaret was around, and I was in a hospital — a serious hospital — surrounded by people telling me to do things I didn’t want to do. They were treating me like a little baby, and I hated it.

They wanted to keep me there. They wanted me to do therapies I didn’t want for reasons I didn’t comprehend. But then, slowly, I realized it was good for me. One woman came in and played memory games with me, and she became key in my rehabilitation. Someone else helped me with my legs and my knees and movement, and I realized I needed him, too. I grasped that I’d been very close to death, and no, I couldn’t really get out of bed. I couldn’t get out of the chair that I slept in. I couldn’t move. I gradually came to understand how ill I’d been, and how much work was required in getting me back in a position to enjoy life. I was loopy and uncomprehending, not realizing just how sick I’d been.

Over time I became less loopy, and I started hearing stories of everything I’d done and said in the midst of all that loopiness. How I kept hitting the nurses’ button, thinking I was in a hotel. How I just wanted to “have a glass of wine and head upstairs to bed.” How I kept trying to yank out all my tubes and get up, and how furious I became at folks who wouldn’t let me. How I howled at Susi, steam coming out of my ears like a Looney Tunes character: I love you dearly, but get the fuck out of my way! I am getting out of this bed!

Apparently I was good at being Mt. Vesuvius.

Amy told me this story: In the ICU, surrounded by family, I asked about the “executive committee” that had made the decision to trap me there. Why? What the hell was that about? Who the hell were they, anyway?

“We’re the executive committee,” she replied. “We love you and want you to be well.”

“Well,” I said, “the executive committee can kiss my ass.”

Through all of this, the television in the hospital room was off and on, and politics — as always — was in the air. The president’s face must have come up in conversation or on the tube, because I’m told I likened him to Voldemort: “I know who it is, and I will not say his name.”

Everyone says I made the nurses laugh.

****

. . . I live in the present — because I have to. It’s not as though I have any choice. I have this moment, and that’s about all I can count on. Amy asked me whether it’s freeing, in a way, and I haven’t given that much thought. I suppose you could make the case. I know I’m in a position that’s unlike anyone else’s in the family right now. And in a strange way, I’m grateful.

The part of my life with Pat was spectacular. We had our problems, but it was wonderfully happy, and I haven’t lost that reward I felt from living with her. Now I’m getting another reward from Margaret. I’m getting a reward from the kids. I’m getting a reward from so many others. I don’t have that kind of classical regret that people have as they look back on their lives, because my life is so rich right now. I think of Betsy, who’s so close to Margaret — to her, she’s become a symbol of maternal caring. She’ll call me up on the phone and say, “Is Margaret there?”

Betsy is a gift. Margaret is a gift. Pat’s still a gift. Death doesn’t change any of that.

The simplest way to explain this, for me, is that old age is no longer encroaching on my life; it’s taking it over. My body is worn out. It no longer has the resilience to effect a cure. But I’m still fortunate, because the discomfort is nowhere near as bad as it could be, and through it all I remain surrounded by loving, caring people who feel that loving and caring reciprocated right back. I don’t want to dwell on my illnesses, on the fairly constant but bearable pain, or on the limitations in what I can do each day. I sleep odd hours — sometimes for long stretches, other times hardly at all — and deal with mildly morbid thoughts all the time. I also require aid and help from those living around and with me.

While I’m long past the point of hoping for a miracle, I’m thankful that communication is easy and love is plentiful. This is the contradiction I’m living out right now: I know the diseases are there, I know they won’t be getting better, and I know they’ll continue to cause pain and discomfort — but at the same time, I have these wonderful people around me. Randy, who’s become my caretaker, reminds me with his steady and giving presence just how fortunate I am. So do all the other loved ones in my life.

I keep myself busy imagining how and when this will all end. Based on past histories, I figure it shouldn’t be too bad — except for my departure from the nests of the people I love. The final gong could easily be a stroke or some other, sudden breakdown, though I damn well hope it isn’t another bout of sepsis. That was the worst pain I’d ever experienced, and I’d rather not go through that again.

Still, I am prepared to die. I am prepared because I know I’m dying, I know there’s nothing I can do to stop it, I know it’s logically the only thing that’s going to happen. There’s no way it’s not. I accept that, so there’s no element of surprise in it for me. But there is something else. There’s one thing I feel, and again, I’m going to use words that have been used for millennia. I have a fear of the unknown.

When you get right down to it, that’s what it is. Right now I don’t have any fear of death itself. I don’t feel that I’m going to be in horrible pain when I die. I could be, but the odds are that drugs will take care of that. That’s not the unknown I’m worried about. Instead, it’s one of those questions I can’t answer.

What’s gonna happen to me?

When I heard Pat’s last breath, it was sort of a little gasp. What was that? What happens right then? Are your lights out completely? Are you done? I think so. But I don’t know. I probably won’t ever know.

I really don’t believe in an afterlife per se. But as far as I am concerned, there is one, and I’m looking at part of it right now. Right here. My family is my afterlife, and I don’t just mean my blood relatives — I mean everyone I’ve had an effect on. Nils is the afterlife for me. Amy and Connie are the afterlife for me. Betsy and Randy and Danny, all of my grandkids, everyone I love — they’re all are the afterlife for me. If you have an impact on somebody, you have an afterlife: That is something I believe in, and it comforts me. For better or for worse, no one can take this afterlife away.

****

. . . . Randy says I seem mostly at peace with all of these gonnas, and to a certain degree I am. I’ve worried about the last one — What’s gonna happen to the people I love? — because families are families, and people are human, and there’s been some stress here and there as I’ve done my best to resolve matters before I die. But I feel I’ve done a pretty good job communicating with everybody, and I believe that the discussions we’ve had have helped. In fact, they’ve been pretty spectacular. Lifesaving, in a way. And everybody deserves some credit for them. I know the family wants to carry on and carry out my legacy, whatever that may be.

But I want them to know that we’ve done the best we could under the circumstances, and while far from perfect, it’s pretty god-damned good. That’s been my hope more than anything else: to have peace and love and good fortune follow my time here on Earth. And if the whole thing can end without any tension, and I think it will, that’s all I ever wanted. I want the family to continue. I want everyone to stick together. Randy says no one will replace me — not him, not Danny, not anybody. They’ll “cobble things together” and find new ways of being together as a family, he says. Maybe Betsy will be the new center of gravity, the loving magnet, and everyone will gather around her.

Maybe he’s right, though I do think “cobbling together” is a little extreme. I know it’ll be different without me. It’ll be different. But they’ll still have each other. I’ll still be a part of their lives in some way.

And they’ll still laugh. Ultimately, that’s all I want. Whenever there’s anything like this — anything tough, any illness, any other struggle or cause of tension — I want them to come together and laugh.

I’m about to leave, so listen to me, please. This is what matters to me.

Do you hear what I’m saying? I want you to laugh.

****

Just a few more sentences. I took one last trip – to Key West, with Margaret – and I am now in my last days. When I decided to stop treatment and go into palliative care, the doctor asked me what I wanted from the final stretch.

I had three words for him: “family and friends.”

I’m surrounded by both.

 

19 thoughts on “dan

  1. I knew Dan and Pat at boarding school in Vermont in the seventies. I babysat for Betsy when she was just two. He gave me rides to therapy a couple of times and he was above all a safe adult in a world that rarely felt safe to me. I was surprised to recognize him here in your pages. I wish him the best. Then, now and in the beyond. Martha.

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  2. Amy, these are the most beautiful words….beautiful while profoundly sad. Sending thoughts of comfort from the Universe to Dan, his family and friends and to you. xoxoxo

  3. Thank you for sharing the real experience of losing out dearest loved ones who teach us to embrace the intense grief so we can joyfully hold onto our memories of life with them. This is your gift and legacy, Amy

  4. Amy I came across your story on Tedx, then this. It’s touching and we’ll writing. I’m so sorry for Dan’s family and friends and your loss. Your an amazingly strong and beautiful soul.
    Bill

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